Some posts have been moved to: Whitney Dafoe Updates
Hilda Bastian has posted on her new Cochrane Stuff page saying she has submitted to Cochrane Comments about missing comments from previous...
If anyone is writing to them, please can you ask them not to use the word fatigue for PEM. It's so misleading.
I suspect it's a decision by deaf people's organisations not to refer to deafness as a disability. I have done a quick bash through the...
Is there a link to the online survey?
I've only read the abstract. So maybe the patients were right, those who did not improve on self reported measures already knew at the start...
I'm guessing this is a student project. It's too small and inconsequential to be serious paid for research.
Jake Hollis I wish you well, but please stop writing articles like this that may make you feel good about yourself and feel like you are helping,...
Thank you Peter, you saved me having a rant as you have said most of it. Clinicians really have made a mess of conditions like ME/CFS. What we...
Hilda Bastian on Bluesky: https://bsky.app/profile/hildabast.bsky.social/post/3li6xkxp3bc2r ‪@hildabast.bsky.social‬ #CochraneStuff This is...
I think you have probably got it right, Hoopoe. This seems to be yet another example of the people lucky enough to recover from ME/CFS or LC who...
I find it bizarre that changes in numerical scores on a questionnaire are treated as though they are linear measurements and can be quoted as 52%...
I haven't had an acknowledgement yet that they have received our complaint about the 2024 version. That was supposed to be done within 3 days, and...
My valentine's gift from Cochrane:
Thanks. So it looks like we discussed it in 2020 before the NICE guideline, and haven't discussed the 2022 update.
I'm not sure a factsheet would be the right way to convey that message. Maybe an article from someone with experience describing how patients can...
I think all we need to tell patient reps and those appointing them is to join the forum. Once we have a set of factsheets and articles that...
Thanks, @InitialConditions. Definitely worth sharing again. Have you submitted it to BACME?
With great difficulty, especially as they have patient reps on the author group, so can say they have listened to patients. And it pretends to be...
I had forgotten just how bad this is. They have a whole artcle on their dysreguation model which as far as I can see tells us nothing. It's...
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